People ask me all the time how they can be involved with the autism awareness movement. My answer is not simple.
A lot of people know that there are more people with autism each year and, right now, most of them are children (due to the recent spike in autism diagnosis’), but very soon, those children will be adults. Personally, I would like to see people with autism in college, owning businesses, in prominent positions in the workforce, in politics, and everywhere else.
How will we reach out and help incorporate these up-and-coming people with autism into the communal mess we are proud to call society? So many people with autism have a perspective that is refreshing, interesting, and worthwhile. Unfortunately, we are missing out on all this refreshing-ness because most of us do not know enough about autism to accept people with autism, their personal values, and cultural perspective. Instead, understandably, we persist in several neurotypical habits that are detrimental to the future incorporation of autsim into the workplace.
Silence makes us neurotypicals uncomfortable, and we are quick to chatter away about nothing when confronted with it, and we take it as rude or cold when others do not play along with our small talk game.
Right now, we love being PC, but it is essentially an extra-difficult, ever-changing set of very-nuanced social rules that is difficult for many neurotypcial people, let alone people on the autism spectrum. All in favor of a little more direct speaking, say aye!
Example: we let ourselves feel uncomfortable around the rocking and flapping that are characteristic movements of people with autism, but we accept pencil tapping and leg jiggling, which are just currently acceptable methods of tweaking out for a second.
So, what can we do to support the autism awareness movement? Before we dive headlong into championing the autism cause, I think we can all do some internal work to recognize our own social/cultural values, and accept the idea that not everyone shares those values. I think, as a society (homes, schools, workplaces, courtrooms…), that we can use our purported ‘mental flexibility’ to change a few of our habits. Before we even meet anyone with autism, we can carve out space for them in our expectations. We can make room. And we should! Otherwise, not only will we continue to pay our tax dollars to support people with a ‘disability’ that doesn’t always have to be debilitating, but we will miss out on an entire interesting, useful, refreshing culture-within-a-culture.
Zac is 19 years old, and I have known him for about 6 years. I was his homeschool teacher, and we spent many hours learning from/frustrating each other. Zac has autism. Our video interview is scheduled for early September–check back and see it!
This post is in process!
Changing the Course of Autism
by Bryon Jepson
Bryon Jepson’s book, Changing the Course of Autism, is intended for parents and physicians of people with an Autism Spectrum Disorder (ASD), including autism, Aspergers, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rhett’s Disease, and Child Disintegrative Disorder. The title infers Jepson’s intent, which is also restated in the introduction; he wants parents and mainstream physicians to view ASD as a medical illness, and not simply a behavior disorder. Being a self proclaimed ‘mainstream physician’ himself, Jepson admits to a deep initial skepticism regarding the biomedical treatment of autism. In the preface, he illustrates his eventual acceptance of autism’s complex framework through his second child’s ASD diagnosis, and his wife’s subsequent investigation. After doing an enormous amount of his own research and literature review, Jepson now views autism as a combination of genetic predisposition, and environmental toxin exposure, that result in a muddled metabolic process, which affects multiple organs.
Jepson seems to understand that his book will need to withstand intense criticism. While many people, including doctors, are becoming accustomed to treating autism with dietary changes, many more people are not comfortable with the other assertions Jepson makes throughout the text. Perhaps in premeditated response to this doubtful reception, Jepson has loaded his book with medical studies, including up to 100 sources per chapter. In an attempt at transparency, Jepson also discloses when he is speculating, and when his research is incomplete. Doing his best to explain complicated biological processes before dissecting the relevant studies, Jepson tries to make good on his goal of including parents as well as physicians in his target audience, but much of this background seems fairly in depth for the average parent.
After establishing the generally-accepted-but-not-entirely-verified genetic component of autism by citing twin studies, Jepson takes the genetic factor a step further. He points to a significantly higher rate of other immune system abnormalities in people and families with autism. After connecting these immune-system imbalances with many of the DSM-IV characteristics of autism, Jepson challenges the medical community to take the list of behaviors in the DSM-IV and list them as symptoms of a more complex disease in medical textbooks.
As if this challenge was not enough, Jepson also revisits the issue of immunizations, mercury, Thiomersal, and autism. In reviewing several pivotal studies which refute the link between autism and immunizations, Jepson references faulty methodologies, fuzzy or even distorted statistics, and a damning conflict of interest as grounds to re-examine the topic. After drawing parallels between the symptoms of too much mercury, and the symptoms of autism, Jepson cites several small immunization studies with radically different conclusions as further support of his cause.
Towards the end of the text, Jepson describes some specific interventions to aid the digestive, and autoimmune health of people on the autism spectrum. While detailing various vitamin and mineral regimes, Jepson reminds the reader that his book is not intended to be a step-by-step guide to fixing a person with autism. Jepson also encourages parents to be their unique child’s advocate, and beseeches physicians to be open-minded about viewing autism in multiple lights.
APA citation: Jepson, B. (2007). Changing the course of autism: A scientific approach for parents and physicians. Boulder, CO: Sentient Publications.
Autism’s False Profits, by Paul Offit
Paul Offit had a bird’s eye view on the autism, vaccines, and thimerosol, controversy. In fact, he made some key decisions during the whole debacle, and some folks deeply resent him for those decisions. In his book, Autism’s false prophets: Bad science, risky medicine, and the search for a cure, Offit describes the people and circumstances that lead up to the current debate over whether or not thimerosol, a mercury derivative, is responsible for ‘causing autism’. According to Offit, who founded the vaccine education center at the Children’s Hospital of Philadelphia, and helped to invent a rotavirus vaccine, there is no scientific debate. He cites 13 epidemiological studies debunking the correlation between autism and the MMR vaccine, and 6 epidemiological studies debunking the correlation between autism and thimerosol. Offit also cites studies claiming that the rate of autism is the same in vaccinated and unvaccinated children.
Although some might think that if the scientific community discredits the vaccine-autism connection, the media and the public should follow suit, Offit knows better. Throughout his book, Offit brings the reader’s attention to the method by which general public receives their scientific information: the media. The media and reliable scientific studies do not do business in the same way, Offit claims. Even fairly dependable media sources do not prioritize the same statistical standards as the scientific community, and neither group explains those standards to the public. Additionally, says Offit, this is the same public in which a full 50% believe in astrology, ghosts, aliens currently on earth, and dinosaurs and humans living in the same time period. This group is easy to scare, and difficult to un-scare, claims Offit, but he is not unsympathetic to parents who are desperate to find a distinct cause for autism. Over and over again, Offit points to a study by Dr. Adrian Sandler in which a half a group of children with autism receive secretin injections (an autism treatment trend in the early 2000’s), and half receive a benign saline injection. According to parent testimony (neither group knew which treatment they were receiving), the children receiving the secretin made improvements, but those who got the saline injection improved even more. This, says Offit and Sandler, is testament to the overwhelming parental need to see progress, to have hope for a cure.
Offit carefully details the way this desperate hope has been manipulated since autism was discovered by Leo Kanner in the mid 1900’s. The ‘false prophets’ Offit denounces include Bruno Bettleheim (refrigerator mothers), Matthew Israel (electric shock therapy), Douglas Biklen (facilitated communication), Victoria Beck (Secretin), Richard Deth (vitamin B12), and Andrew Wakefield and Defeat Autism Now (mercury chelation). According to Offit, each of these hysterical fads were based on sloppy, flawed research. The media, seeing itself as ‘defenders of the weak’, flashed newsbreaks about these treatments, and several politicians, not understanding the science themselves, got roped into promoting various dubious treatments. Many confused parents, already inundated with internet-cures and anecdotal stories, leapt to experiment with a huge variety of treatments, only to find their hopes dashed over and over again. Offit seems saddened and disgusted by these under-researched treatments, and slightly fed up with parents who turn an overly-critical eye on meticulously researched government-sanctioned vaccine programs, but do not keep this same critical outlook when evaluating treatments for their children. Although Offit receives hate mail and death threats from people who, despite all the evidence, still believe vaccines cause autism, he is committed to telling his version of the convoluted autism story.
APA citation: Offit, P. A. (2008). Autism’s false prophets: Bad science, risky medicine, and the search for a cure. New York: Columbia University Press.